TY - JOUR
T1 - Transitioning care for adolescents with spina bifida in the US
T2 - challenges for management
AU - Reynolds, Rebecca A.
AU - Vance, E. Haley
AU - Shlobin, Nathan A.
AU - Bowman, Robin
AU - Rosseau, Gail
N1 - Publisher Copyright:
© 2023, The Author(s), under exclusive licence to Springer-Verlag GmbH Germany, part of Springer Nature.
PY - 2023/11
Y1 - 2023/11
N2 - Open spina bifida (OSB) is a common neural tube defect. Medical and surgical care involves addressing the baseline orthopedic, urologic, and neurological dysfunction as well as the changes or declines that may occur as the patient ages. Given the complexity of this disease, coordinated, multidisciplinary care involving specialists in neurosurgery, orthopedics, urology, rehabilitation and physical medicine, pediatrics, and psychology is necessary to establish and optimize baseline function. Traditionally in the US, pediatric multispecialty spina bifida clinics have provided the patient with a coordinated medical support system. Unfortunately, this coordinated, medical home has been difficult to establish during the transition from pediatric to adult care. Medical professionals must have a strong understanding of OSB to properly manage the disease and detect and prevent associated complications. In this manuscript, we (1) describe the changing needs and challenges of people living with OSB over a lifespan, (2) delineate current practices in the transition of care for people with OSB from childhood to adulthood, and (3) provide recommendations for best practices in navigating the transition process for clinicians who provide care for those afflicted with this most complex congenital abnormality of the nervous system compatible with long term survival.
AB - Open spina bifida (OSB) is a common neural tube defect. Medical and surgical care involves addressing the baseline orthopedic, urologic, and neurological dysfunction as well as the changes or declines that may occur as the patient ages. Given the complexity of this disease, coordinated, multidisciplinary care involving specialists in neurosurgery, orthopedics, urology, rehabilitation and physical medicine, pediatrics, and psychology is necessary to establish and optimize baseline function. Traditionally in the US, pediatric multispecialty spina bifida clinics have provided the patient with a coordinated medical support system. Unfortunately, this coordinated, medical home has been difficult to establish during the transition from pediatric to adult care. Medical professionals must have a strong understanding of OSB to properly manage the disease and detect and prevent associated complications. In this manuscript, we (1) describe the changing needs and challenges of people living with OSB over a lifespan, (2) delineate current practices in the transition of care for people with OSB from childhood to adulthood, and (3) provide recommendations for best practices in navigating the transition process for clinicians who provide care for those afflicted with this most complex congenital abnormality of the nervous system compatible with long term survival.
KW - Anencephaly
KW - Folate fortification
KW - Folate supplementation
KW - Global health
KW - Global neurosurgery
KW - Neural tube defects, Folic acid
UR - http://www.scopus.com/inward/record.url?scp=85153888863&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=85153888863&partnerID=8YFLogxK
U2 - 10.1007/s00381-023-05955-8
DO - 10.1007/s00381-023-05955-8
M3 - Review article
C2 - 37099139
AN - SCOPUS:85153888863
SN - 0256-7040
VL - 39
SP - 3123
EP - 3130
JO - Child's Nervous System
JF - Child's Nervous System
IS - 11
ER -